Levothyroxine intolerant?: Hello, Im new here... - Thyroid UK

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Levothyroxine intolerant?

Classiccarman
Classiccarman

Hello, Im new here, Ive been taking Levothyroxine since late 2014, then Dec 2015 had flu for 2 weeks, I then seized up, my joints so sore and achy, had a really bad rash hives, red sore raised round patches all over me, my GP said it wasnt the levothyroxine as Id taken it no problems for 15 months, no bloodtest!?

He referred me to a consultant rheumatologist and I had steroid injection that got me back on my feet, lasted a few months as I paid for another one. This all wore off and I switched off(thats what it felt like) lost lots of weight, night sweats, aching joints, hives, headaches. Ive had MRI and CT and Ultrasound scans, referred to Rheumatology, Hematology, Thorasic, Immunology and now to Endocrine services, after a 4 year journey like a lab rat being tested for all sorts of things, cancer and lymph node biopsies(Ebus), bone marrow biopsies.

Had pericarditis, carpal tunnel syndrome, weakness.

Oral steroids(pred) prescribed as well as colchicine, Accrete D3, omaprezol, general vitamin tablet.

Im on Warfarin as had 2 DVTs.

Ive been tapering the prednisolone trying to get off them repeatedly and always put my symptoms down to these until I read the paperwork for the Levothyroxine for side effects OMG it seems these are exactly what Im experiencing. Also my sister is allergic to Levothyroxine and did the same to her so was prescribed Liothironine?

Im currently on 5mg prednisolone and 1.5 mg Colchicine as I managed to get off steroids early Dec last year but had to go back on them on 31st Dec as my joints started to progressively get worse again.

Do you think its the Levothyroxine anyone?

Also reading here about blood tests not really being looked into properly only doing TSH levels yet lots more to look at. Im starting the 5th year of this now, I feel Im taking drugs to combat the drugs ☹

23 Replies

Hi Classic so sorry to hear how poorly you've been and the tests you had to go through. I had been on only levothyroxine 150mcgs since the age of 15 without to many symptoms ...and just got on with it when I hit 56 menopause hit me like a sledge hammer and I've never been right since. Doctors and family say you've taken it for all those years what's the problem now ....I've only just yesterday been agreed with by an endo that my body cannot tolerate levo..i will be 64 soon and my hormones etc have changed I just tried liquid levo for 2 weeks it was like putting diesel in a petrol car made me so poorly had to pay 150 pounds for a bottle that lasted 12 days as my gp would not agree it even though an endo had only asked for a trial of it to see if it would make a difference I paid it as I would pay anything to feel even a little normal again but omg it made me worse. After an urgent phone call with endo yesterday he wants me to carry taking my tablet of levo 150 to get my numbers back to normal ..as he puts it and maybe slowly bring the 150 dose down and try t3...that's 287pound a box for 1 month...on a very small dose ..but I know without all the tests you've had get an endo to try you on either ndt or t3 dont carry on taking it because as I've said you just get sicker and feel terrible.I wish you all the luck and hope you find a good solution, the girls and guys on the site are so helpful, and so experienced.

Take care stay safe xx

SlowDragon
SlowDragonAdministrator in reply to Christinah61

T3 is actually mow £138 for 28 tablets

Or £1 tablet for German T3 via specialist pharmacies

Often daily dose is only half a tablet per day (usually as 2 x 1/4 tablet) or possibly 3 x 1/4 tablet

But BEFORE considering adding any T3 it’s essential to fine tune levothyroxine and get all four vitamins at optimal levels

Hi slow yes I was going to ask a pm of were I can get some t3 5mcgs to try .thank you so much for your help.

SlowDragon
SlowDragonAdministrator in reply to christina61

Your endocrinologist should give you a prescription

5mcg tablets are very expensive

Most people get 20mcg and cut into 1/4s

Suggest you write your own post with latest results and info

SeasideSusie
SeasideSusieAdministrator

Classiccarman

Have you always had the same brand of Levo?

What brand are you currently taking?

Have you got any test results you can post, please also incude reference ranges.

Hi, Im on Anum the Boots Levothyroxine, I have no bloods to show but had some done Thursday just gone awaiting results Tuesday, should I ask exactly what they tested for?

SeasideSusie
SeasideSusieAdministrator in reply to Classiccarman

Classiccarman

The Boots branded levothyroxine is Almus which is made by Accord. Have you always been on this brand, never had another?

Just ask the receptionist (never the doctor) for a print out of your results, don't get into any conversation just get the print out, everything will be on there, then post results and ranges on the forum.

Hi yes always been the Almus I think, will be speaking to nurse Tuesday and will ask for results 😎

SeasideSusie
SeasideSusieAdministrator in reply to Classiccarman

Classiccarman

will be speaking to nurse Tuesday and will ask for results

Your nurse may be willing to print them off for you. If she asks why just say "for my records", nothing else. If nurse is not willing you need to ask the receptionist who may need to get permission from a GP, but don't take no for an answer as we are legally entitled to our results under the Data Protection Act. Some surgeries don't like giving them to patients but they must otherwise they are breaking the law.

SlowDragon
SlowDragonAdministrator

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

If yes....Which brand?

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

Presumably, looking at your forum name, you are male?

Night sweats is frequently low B12

Joint pain is frequently low vitamin D

On levothyroxine we frequently need to supplement continuously to maintain OPTIMAL vitamin levels

But ALWAYS test first

Do you have recent test results and ranges?

If not, you are legally entitled to copies of them

So that’s first step, to find out exactly what has been tested and what results were

Far too often only TSH is tested, which is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Hi, 150mg of Anum Levothyroxine Ill have a read of the links you have shown me and chat with my nurse on Tuesday about what they tested me for

SlowDragon
SlowDragonAdministrator in reply to Classiccarman

Always get actual results and ranges on all tests

Keeping good records yourself to see trends in levels over time

On levothyroxine TSH should ALWAYS be under 2

Most people will have TSH well under one when adequately treated

The most important result is always Ft3, followed by Ft4

Ft3 at least 60% through range and Ft4 will frequently be higher % than that in order to get high enough Ft3

All four vitamins need to be optimal as well

Vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Folate and ferritin at least half way through range

Do you know cause of your hypothyroidism ?

Autoimmune?

Or following RAI or thyroid cancer?

Hi Ive an underactive thyroid

SlowDragon
SlowDragonAdministrator in reply to Classiccarman

And, presumably, as your sister is also hypothyroid, it’s autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Do you know if you had thyroid antibodies tested at time of diagnosis

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Assuming coeliac test is negative....

The ONLY way to know if you are gluten intolerant is to try it ....3 months minimum

Sorry Ive no idea what Ive been tested for, this is a wealth of info youre giving and a lot to take in, thankyou

SlowDragon
SlowDragonAdministrator in reply to Classiccarman

One step at a time

Get copies of all test results since thyroid diagnosis (and any tests shortly before that ideally)

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Get anything that’s not been tested on NHS tested via private testing

Come back with new post once you get copies previous results.

Members can advise on next steps after that

Ok thankyou 👍🏻

SlowDragon
SlowDragonAdministrator in reply to Classiccarman

Presumably you mean Almus levothyroxine

This is Accord brand, boxed as Almus by Boots and as Northstar by Lloyds - available as 50mcg and 100mcg tablets

Beware Northstar 25mcg is Teva brand

Weblinks on TSH

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

SlowDragon
SlowDragonAdministrator

Sounds like you are under medicated

carpal tunnel syndrome, weakness.

Oral steroids(pred) prescribed as well as colchicine, Accrete D3, omaprezol, general vitamin tablet.

Im on Warfarin as had 2 DVTs.

Carpel tunnel - common hypothyroid symptom

Omeprazole or any PPI is to treat high acid

Most hypothyroid patients have LOW stomach acid. Same symptoms, very different treatment

PPI will significantly lower vitamin levels further, especially B12 and magnesium

We see thousands of members on here inappropriately prescribed PPI

It takes a while to unpick the mess

You can’t just stop a ppi

Need to get levothyroxine dose fine tuned and improve low vitamin levels first

Low stomach acid extremely common hypothyroid issue

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Ppi and low vitamin levels

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

How much vitamin D are you currently taking

When were vitamin D levels last tested

Vitamin D needs magnesium as important co-factor.

General multivitamins never recommended on here either

Thanks for the reply, It was a few years ago the carpal tunnel syndrome but my wrists ache aswell as all other joints especially fingers as I work. I dont take the omeprazole any more as doc said I was on a low dose of steroids dont need to take. My bloods were done last Thursday but after my meds and breakfast an hour earlier, the nurse rang as she said forgotten to do thyroid bloods and endocrinologist reminded her as they want results or measurements before we talk

SlowDragon
SlowDragonAdministrator in reply to Classiccarman

So you need to get bloods redone....if they are not keen, you could say (as little white lie) that you forgot to stop taking your biotin supplements

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Biotin falsely affects blood test results....can be useful info if you need to stop them testing after you have taken your levothyroxine

Alternatively....getting FULL thyroid and vitamin testing done privately

As you will see thousands of members on here do

NHS rarely tests more than TSH and Ft4

I was having those aching wrists, carpal tunnel and finger pain. Recently increased my Levo by 12.5 mcg daily and it went away. Previously, I was dragging my legs around and couldn't bend over without pain. My body was so weak, even my face started turning a darker red color. I experience hives when my Levo is not high enough.

Wow thats interesting thankyou

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